Around the bend

For most children with scoliosis, the path to recovery is marked by simple observation and bracing. But when one patient battles two curves, her path—and spine—take an unexpected turn.

Anjellina Guiliano (left) is back to enjoying her life

At 11 years old, it wasn’t normal for Anjellina Guiliano to have back pain. At first, she thought she might have slept on it awkwardly, and shrugged it off. When it continued to hurt for weeks, her mother, Francine, began to rub her daughter’s back with a topical pain reliever each night to make the pain go away.

But as Anjellina took her zombie costume off after trick-or-treating on Halloween, Francine noticed something that she hadn’t seen before: two large bumps—one under her right shoulder and one near her left hip. “I noticed it right away and my eyes filled up instantly,” says Francine. “When I had been rubbing her back, she had always been sitting, but standing up, it looked like she was hiding mini watermelons under her skin.” Panicked, she made a doctor’s appointment for the next day.

At Anjellina’s primary care doctor’s office, it was clear that Anjellina needed specialized care. “I heard the doctor yell to the receptionist, ‘Get Children’s on the phone,’ and it really scared me,” says Francine.

Daniel Hedequist, MD

Her suspicions were confirmed at Boston Children’s Hospital a few days later, when they met with orthopedist Daniel Hedequist, MD. After a physical examination, X-ray and MRI, Anjellina was diagnosed with severe idiopathic scoliosis that only surgery could fix. “He didn’t even need a scoliometer,” remembers Anjellina. “He could already tell it was serious while I was standing up.”

Scoliosis affects three to five out of every 1,000 children, and the most common form, idiopathic scoliosis—which just means it doesn’t have a known cause—usually appears as children enter growth spurts. While there isn’t a cause or a specifically identified genetic link, adolescent females who have family history of scoliosis are most likely to get it.

Often, children with scoliosis who have curves ranging from 10 to 30 degrees only need occasional observation and check-ups through their growing years, but others need bracing—a technique that requires the child to wear a hard, custom-designed brace 18 hours a day to stop the curve from worsening. Even with bracing, most children and teens with scoliosis can usually still participate in sports and live normal lives. But since Anjellina’s two curves measured 83 and 97 degrees, her path to recovery would be more complicated.

“We knew the curve would only get worse as she grew older,” explains Hedequist, “and once I showed her family the X-rays, it was easy for them to grasp what would need to be done.”

Francine quickly learned about the surgeries her daughter would need, but was blindsided by the news, especially since Anjellina had sailed through her yearly physical. “I kept thinking to myself, ‘How could I have missed this?’” But Hedequist explained to her that when growth spurts happen, curves can progress very rapidly, and the bumps that Francine saw on her daughter’s back were the result of her spine curving and rotating out of place. That rib and spine deformity underneath Anjellina’s right shoulder was so large, and the curve so great, that it had compacted the right side of her rib cage, making it feel like one solid sheet of bone.

Though most children who have scoliosis don’t need surgery, the ones who do often go through a procedure called spinal fusion—a process that fuses the spine together with rods to keep it strong and straight. However, Anjellina’s case was so severe that not only would she need to undergo the typical spinal fusion, she would also need to go through a preparatory, month-long process called halo traction—which would slowly and gently stretch her spine and correct some of the curve before spinal fusion surgery.

Hedequest told them that the set of procedures meant that Anjellina would need to stay in the hospital for more than a month. The holidays, as well as Anjellina’s 12th birthday, were rapidly approaching. Francine worried that living in the hospital during the holidays would be hard on both Anjellina and their family, so Hedequist developed a timeframe that would work for Anjellina’s comfort and for her curves. “There was definitely risk of her curves growing during that waiting period,” explains Hedequist, “but we could plan it soon enough that she would be safe, and still be able to spend the holidays at home.”

The holidays and Anjellina’s birthday came and went, and the night before her surgery, she was confident. “We had a family movie night, and my brother made whoopee pies, which was the last thing I ate before my first surgery,” she remembers. The next morning at 4:30 a.m., she woke up unafraid. “More than anything I was relieved to be on my way to getting better,” she says.

Anjellina, second from left, can jump and play like any other girl after her scoliosis surgery

In the operating room, she underwent anesthesia, and the process began. Hedequist carefully placed the halo—a sturdy metal ring—around Anjellina’s head, and fixed it to her skull with pins. When the halo was firmly set, a long cord attached to the top of it was threaded through a pulley system above her, and as it drops toward the ground, it attaches to a five-pound weight. That weight pulls the cord, which then pulls upward on the halo, skull and spine, slowly and painlessly straightening Anjellina’s curves. “I got used to the feeling of having the halo on, and before I knew it, there was much more weight – up to 30 pounds,” says Anjellina.

Day by day, Anjellina established a new life at the hospital. Francine, who was there each day, would eat breakfast, lunch and dinner with her daughter, and spend their afternoons making crafts, playing games and watching television. “We had a lineup of shows for every night of the week,” remembers Francine.

As the month went by, Anjellina acclimated to her surroundings. Even with halo traction, she was able to get up and move around in a wheel chair, and spend time talking and playing games with the nurses. One night with the help of her nurses, Anjellina created a movie night for other patients to watch the movie “Annie” in the common room. She made posters promoting the event, and invited other patients to join her.

Weeks went by, and Anjellina spent her time playing with her iPad, writing in her journal, making bracelets and keeping a scrapbook of her time in the hospital. Anjellina’s friends, brothers and sisters visited her, and Francine made a point to decorate the halo with colorful beads and flowers to remind Anjellina to look on the bright side. “At first I was worried about her being in the hospital so long,” says Francine, “but as time went on, she got her teenage attitude back, and I knew she was fine.”

Soon enough, February ended, and it was time for Anjellina’s spinal fusion surgery. “In a spinal fusion, we straighten the spine to a safe degree with rods and screws, and fuse the bones together so that they can’t curve anymore,” explains Hedequist. Anjellina prepared herself for the final step in her recovery, and the next morning Hedequist began to operate.

When Anjellina woke up, the problems in her back had been corrected, and she was three inches taller. Recovery for this operation would be shorter, but more painful than the halo placement. “At first, when I tried to get up and walk, it felt like just my bones were touching the floor,” she says. “But the next day, I could walk more comfortably with a nurse, and day after day I started to feel better.”

“In a spinal fusion, we straighten the spine to a safe degree with rods and screws, and fuse the bones together so that they can’t curve anymore,” – Daniel Hedequist, MD

Anjellina was tasked with a list of things to accomplish before she was ready to leave the hospital. The list—which included things like walking up stairs, finishing her scrapbook, eating and coming off medication—seemed impossible at first, but she was determined to fully recover, finish every item and get back to her normal life. Five days later, that’s exactly what she did.

“I had finished everything on the list, and Dr. Hedequist came into the room,” remembers Anjellina. “He asked me and my mom if we wanted to go home, and my mom stood right up and said ‘Yes!’”

That night, Anjellina and Francine were excited—their long and winding journey was about to end. They woke up early the next morning, and Anejllina’s stepfather picked them up. “We drove so slowly home just to be extra careful,” she remembers. And though it was only 7:30 in the morning when Anjellina got home, all five of her brothers and sisters were up and waiting for her highly anticipated arrival. “She was so happy, she cried for the rest of the day,” says Francine.

“I was gone for over a month,” says Anjellina, “it was just so nice to be near my family, in my own home.” From that moment on, Anjellina’s older sister, Ana, stayed by her side, and constantly helped with whatever she needed.

Now back at home, Anjellina goes to school, helps her mom in the garden and rides her scooter. “I feel so much better,” she says. “My back doesn’t hurt anymore, I feel good about the way I look now, and I’m just relieved to look back on this whole thing and be done.”

What a great story and the fact that you have such a great hospital for treatment. My son was 5 years old with an 85 degree curve. He had growing rods put in and under goes surgery every 6 months to have them lengthened or switched out. He is now 9 years old. He will need to go through this for another couple of years. At that time, he will have his back fused. We have an exceptional pediatric orthopaedic surgeon (Dr. James Sanders) at Golisano Children’s Hospital in Rochester, NY. Thank God for him!!!

I too have Scoliosis, and had a Harrington Rod put in when I was 17. So I can very much relate. But now I am 48, and having terrible pain with my lower back muscles and they say surgery wont help heal the muscles that were strained. So I take strong meds just to walk without pain. I wish there was another answere for me. They say I just have to learn to live this way and deal with the pain. My surgery was at Baylor Hospital in Texas, and my surgeon was Dr. Lemon.

my neice who is11 just had her surgery in April. She had 3 curvetures. She was the first patient to have a new surgery done. They combined the shilla procedure along with spinal fusion. She was only hospitalized for 3 days, and seems to be doing great!With this procedure, the rods are able to extend as she grows. Meaning they won’t have to do anymore surgeries if all goes well. So far, so good.They’ve come along way in the past few years.

My name is Chase and I am 11. I just had my 12th procedure done to correct my scoliosis on May 30. My curve was 90 degrees. I have had surgies done at Children’s hospitals in both Birmingham and St. Louis. My family started a blog on caring bridge to follow my journey. Please visit at Chase4Jesus/caringbridge. Even though it has been tough at times, I am looking forward to doing normal stuff. I will be praying for you.